The lymph nodes on my neck and chest have significantly reduced. Whether from the radiation treatment, the steroids, or the reduction in the immune suppresents is impossible to say. Likely from some combination of the three. The radiation treatment literally only takes about 15 minutes, and it does not feel like anything at the time, nor does it hurt afterwards. I have not had any side effects of skin-burn, or throat irritation, but it still takes it out of me. The fatigue is stunning. I have been working to keep my fluids up, so that the things released from the treatments get flushed out as fast and fully as possible. I am on a good bit of pain meds, but it is the fatigue that is crushing. At a certain level, fatigue actually hurts.
The radiation treatment was 400 centigray last Thursday and Friday, and then 300 centigray every day this week. Because the target is small it is not a lot of total radiation. The techs that run the machine are a wonderful bunch of young (30ish), bright, chipper, upbeat people, and even though the radiation makes me feel awful, I find that I enjoy seeing them.
After my final treatment on Friday, I have a meeting with Dr. Connelly, and we will be talking about what is next. Clearly, the radiation has kept the lymphoma in check, but it is not a cure because lymphoma is a blood cancer, not localized in an organ. So despite the fact that the symptoms have been treated pretty successfully, I am not sure what the status is. I think that the doctors are hoping that as they lower my immune suppresents, my donor cells will step up and recognize the lymphoma cells as bad and clean them out. I don't know how long that will take, or how we will know whether it is working.
For myself, I need to get some idea about a timeline of possible progress. I am still having some emotional difficulty keeping my chin up with this latest bout. The fatigue exacerbates this feeling of endless slogging, but the fact that I have no idea of where I am in this latest round of this war makes it hard. I hope that I am winning, but I am not even sure of that. I do what I can - I get out for a walk every day, and Becky has been feeding me great food. I keep my fluids up. I go to my radiation treatments and doctor's visits. I take my pills. I spend hours every day napping - to the extent that most of my awake time is to simply work through the list above. But, it would be nice to have some hours in a day where I am NOT simply fighting this illness. I was starting to have that about a month ago, and I am looking forward to that again. I just have no idea when that might be. 3 months? 9 months? 2 years? Bleh.
I have heard that the type of lymphoma that I have could even have changed because of the bone marrow transplant, although I am not sure how that works. If it did change, then it can only change for the better, because you can't get a worse form of lymphoma than the one that I had, so that might be a positive thing.
I will try to post an update this weekend and let you all know what the doctor says about the next stage of my treatment.
The radiation treatment was 400 centigray last Thursday and Friday, and then 300 centigray every day this week. Because the target is small it is not a lot of total radiation. The techs that run the machine are a wonderful bunch of young (30ish), bright, chipper, upbeat people, and even though the radiation makes me feel awful, I find that I enjoy seeing them.
After my final treatment on Friday, I have a meeting with Dr. Connelly, and we will be talking about what is next. Clearly, the radiation has kept the lymphoma in check, but it is not a cure because lymphoma is a blood cancer, not localized in an organ. So despite the fact that the symptoms have been treated pretty successfully, I am not sure what the status is. I think that the doctors are hoping that as they lower my immune suppresents, my donor cells will step up and recognize the lymphoma cells as bad and clean them out. I don't know how long that will take, or how we will know whether it is working.
For myself, I need to get some idea about a timeline of possible progress. I am still having some emotional difficulty keeping my chin up with this latest bout. The fatigue exacerbates this feeling of endless slogging, but the fact that I have no idea of where I am in this latest round of this war makes it hard. I hope that I am winning, but I am not even sure of that. I do what I can - I get out for a walk every day, and Becky has been feeding me great food. I keep my fluids up. I go to my radiation treatments and doctor's visits. I take my pills. I spend hours every day napping - to the extent that most of my awake time is to simply work through the list above. But, it would be nice to have some hours in a day where I am NOT simply fighting this illness. I was starting to have that about a month ago, and I am looking forward to that again. I just have no idea when that might be. 3 months? 9 months? 2 years? Bleh.
I have heard that the type of lymphoma that I have could even have changed because of the bone marrow transplant, although I am not sure how that works. If it did change, then it can only change for the better, because you can't get a worse form of lymphoma than the one that I had, so that might be a positive thing.
I will try to post an update this weekend and let you all know what the doctor says about the next stage of my treatment.
Leif, wishing you peace through this and finding a way to endure minute by minute and trying to let go and be in the moment...sounds ridiculously hard and I can not begin to imagine how hard it is. Have you ever read Jon Kabat-Zinn or Pema Chodron for mindfulness? It would surprise me if you hadn't!
ReplyDeletePaula
Looking forward to the update and happy the radiation treatments are in the rear view mirror now.
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